Friday, December 11, 2009

Now what?

I have denied, gotten very angry, cried ALOT..... Finally accepted that this is real and I can't fix it. Now what.... ? I just go on, Tyler is a perfectly normal 3 and 1/2 month old baby. The enzymes, the salt in his bottles, the airway clearances....etc. Its all normal to me now. I do get very nervous taking him for his cf appointments. But I think that's because I still have so many questions. Usually the doc's response is"we have to wait and see", I'm trying to get used to that too. The unknown is the hardest part.

Thursday, December 10, 2009

The beginning...

This is the beginning of the first ever blog for the Hendricks Family...Bear with me I am new to this! I'm hoping to share with all of our family and friends Tyler's footsteps through life with Cystic Fibrosis and how it affects us all as a family.

In August of 2009 I was blessed with my fourth child. Having a 15, 13 and 8 year old at home I thought number 4 would be a breeze. First revelation...don't ever assume anything is going to be easy just because you have done it before! Three previous pregnancy's no problems but with the fourth by 13 weeks I was on bed rest. I struggled through the rest of my pregnancy not knowing day by day if we would make it the whole nine months. Bed rest and meds I did make it. I was induced on August 26 2009, a few weeks early. The longest most painful labor and delivery of any of my kids. Tyler was officially here and he was perfect. All of my fears of something just not being "right" for the last nine months vanished, after I counted all his fingers and toes of course. I held a perfect little newborn. We went home and for the first week everything was perfect, normal, newborn baby stuff. No sleep, stumbling around in the middle of the night making bottles. It wasn't until his first week check up I had any reason to think anything was different with him. I don't remember much of that day really, everything was fine, and then the doc said "We had an abnormal result come back on Tyler's newborn screening...I want you to repeat the test today... its possible he has Cystic Fibrosis.." Then all I heard was blah blah head was spinning, I got sick to my stomach even though I had never even heard of cystic fibrosis, I knew in my gut it was bad...We did the repeat newborn screening but had to wait a week for the results. I came home and googled Cystic Fibrosis....and then I held Tyler and cried...and cried. 10 days later with the results of the 2nd newborn screening and a sweat test Tyler was diagnosed with CF. Our lives are forever changed by his diagnosis, but thankfully with all the information and support I have received from my new found Internet family I can finally look into Tyler's baby blues without bursting into tears...